The Whispered Roar
— Shawna Barnes

The sloth and a snowflake. Why in the world would a person, community, or organization choose those two symbols to represent myasthenia gravis (MG)? Surely there must have been better critters or weather phenomena to represent the one-of-a-kind rare disease that makes us … move … slowly. Huh. Then…

“You should drink celery juice and cleanse your body. It will cure you!” “I’m a distributor for this supplement company, and I know it will make you feel better and cure your autoimmune disease.” “Have you tried yoga?” These are the top three “cures” I’ve heard from usually well-meaning…

Being a teen mom, Iraq, husband No. 3, myasthenia gravis, moving halfway across the country, getting a new team of specialists, and a 5k. What do these random things have in common? They’re all hard things I’ve overcome. On the backside of Memorial Day, I find myself reflecting on…

The good ole Army still has a few things to teach me nearly 12 years after my medical retirement. “Piss-poor planning makes for poor performance” was drilled into my head as a combat medic. When you fail to plan, sh*t invariably hits the fan. But even when you do…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. What is a prednisone taper? Technically, it means to gradually lessen the dosage of the corticosteroid over time. But if…

I failed at being a business owner. Big time. I had to lay off employees and break contracts, and I felt like I had let a lot of people down because of myasthenia gravis (MG). I’m still paying debts a year and a half after closing the business…

“Would you stop sharing so much about mya … whatever the hell it is you have? All you’re doing is looking for attention.” Anyone else heard that before? Maybe from colleagues at work when you’re trying to explain why you’re requesting accommodations? Or family members who roll their eyes…

Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or barely surviving? The answers to these questions will be different for many of us with…

The COVID-19 lockdowns had just started, and small businesses around the world were shuttering at an alarming rate. Many weren’t only temporarily adjusting, they were closing for good. Being in quarantine meant no customers wandering around downtown to shop on a lazy Sunday afternoon. There were no lunchtime meetings,…

Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This month, he wanted to share his own thoughts, so we communicated via email and phone conversations…

I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.

Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia gravis (MG), the ability to celebrate big wins becomes a rare event of its own. Those…